Today has been a rough day for me as I have had to say goodbye to the happiest kid in the world and say hello the the chemo induced vomiting and grumpiness.  You can definitely tell that there is chemo flowing through Skylers body right now.  He has been really whiny today and is really sick tonight.  I know he hates that he is grumpy but he just cant help it right now because he feels awful.  I was really dreading this and was hoping it wouldn't happen but the chemo is helping keep the bad guys away so I cant be too mad at it.  Right now Im sitting with him in his bed while he holds his "barf cup" up to his face.  He is saying "Im just so mad mommy, I dont like this"  It breaks my heart.  This day is definitely an I HATE CANCER DAY.

 Sick little boy tonight.  We dont have barf buckets anymore so he uses plastic cups that way we can just throw it away when he is done instead of washing out the bucket.

He got sick of holding it so he just stuck it to his face.  Kinda funny yet sad at the same time.

I know this is Childhood Cancer Awareness Month and I will continue until the day that I die to try and raise awareness and find a cure for childhood cancer, but yesterday I learned about a 14 year old girl that is trying to raise awareness for Mitochondrial disease, a disease which her 2 year old brother is battling.  When I read this email I was touched because I know how devastating this disease can be because my friends little girl actually passed away this year from it.  I was so privileged to meet this little girl when she came up to visit Skyler when he was in ICS.  I immediately fell in love with sweet Maggie and was devastated to learn of her death.  Mito is a progressive disease and just like childhood cancer it doesnt have a cure, it also takes lives of sweet innocent little children like cancer does. It is not rare, but is rarely heard of.  I was so touched by this 14 year old girl named Delaney and what she is doing for her brother.  I can relate to the helplessness she must be feeling because I have felt it when watching Skyler suffer and know that there was nothing I could do to make him better and to take away his pain.  She has started a Face Book page to raise awareness and is trying to get people to like her page and to learn about Mito.  

If you are on FB you can visit her page here Http://www.Facebook.com/wishgrantedproject

Also here is a picture of sweet Maggie who was taken from this earth and her mothers arms far too early from this disease.

Today was Skyler's very first maintenance appointment.  We were there bright and early and were able to talk to our oncologist about what will happen in maintenance.  There will be three month cycles and everytime he goes in he will receive Vincristine in his line, and he will also get an LP the first two months but not on the third month.  Since he is high risk he gets LP's more than a standard or low risk ALL patient.  He will also be getting the chemo 6-MP at home every night and Methotrexate once a week except for the week he will be getting it in his spine.  I thought today was going to be a longer day because with an LP it usually is, but we were in and out within three hours!  This is by far the shortest clinic visit we have had yet.  The best part was scheduling our next appointment for a month out.  It was so weird, but I can definitely get used to this.  With Skyler being Skyler though Im sure we will be in there more often but its nice to know that if everything goes right we dont have to be.  I pray with everything in me that maintenance for Skyler will go how it is supposed to and he will be able to get some normalcy in his life.  These past couple of weeks off chemo he has been the HAPPIEST kid in the world.  He wakes up smiling and laughing and happy and goes to bed a smiling happy kid.  He has also gotten his appetite back (I think because food actually tastes normal again without all that harsh poison messing up his tastebuds) and his weight went from 16.1 kilos to 17.1 today.  It has been so wonderful and you can just tell he feels so good both physically and emotionally.  I really want him to keep feeling this way, I want him to be happy and feel good, not just for a few weeks I want him to feel good from now on. 

Here is one of the docs feeling his liver and making sure everything looks good.  Skyler's belly is still bigger than normal which has been worrying me but his liver doesnt feel too big so they are just going to watch it.  Look at all that hair!  It has grown so fast.  Even though its fun to see him with hair agian I do miss his soft little bald head.  Its crazy how you become so attached to something that once seemed so weird and not right for a little child.

Here he is getting his Vincristine.  Its just a push so its so much faster than having it run on a pump.  Ive had very mixed feelings about him starting chemo again today.  On one hand I get very nervous with him being off chemo because I want those "good guys" in there to make sure they are keeping the "bad guys" away, but on the other hand he has felt SO GOOD not having it flowing through his veins and I know as Im watching it go in that this stuff is going to make my boy feel sick again.  I very much have a love hate relationship with this stuff.  Its also not fun seeing the nurse have to lay a pad over Skyler and drape himself with a gown and heavy duty gloves in case anything spills on him, but at the same time pushing it directly into Skylers heart.  Even though I know this stuff is going to help keep my son alive it still gives me a sick feeling.

This is Sky just waking up from his LP.  He really wanted cheetos and six saltine crackers.  He was so hungry this morning so right when he woke up thats the first thing he asked for.  He did really well today with his sleeping medicine and Im so proud of him.  Im very proud of him for making it this far!  Love you Skyler!

This is just going to be a quick post because I thought this was hilarious.  I was in my bedroom and I hear Skyler say "Mom Im ready for bed!"  As I walk down the hallway I see him walking to his bed with these in  his arms.....

Yes, that is an entire bag of oreos and four fruit leathers!  His excuse which he said in a very serious voice was "Im just trying to get my weight up silly goose"  Haha... yes I did let him take one oreo to bed, silly boy

Today has been a busy and fun day.  First we had our home health nurse come draw labs to see if Skyler made counts to start his first maintenance appointment, and all of his counts are great!  I was expecting them to be good because of how well he looks and how happy he is.  His ANC is 3.4 which is great.  His platelets are 218, a big jump from 36 last week.  His hematocrit was a whopping 38!  He did get a unit of blood last week but this is the highest I can ever remember it being.  He will go to clinic on Monday to officially start maintenance.  He will get a back poke to put chemo in his spine, he will get vincristine and he will also start back up on his chemo 6MP that he will take at home everyday along with a Methotrexate pill he will take once a week.

We also had a very special visitor today.  Daphne one of Skylers cancer buddies came and gave Skyler a present and also played.  Skyler loves Daphne!  She is one of the sweetest girls and he always talks about his cancer friend Daphne.  He was so excited that she was coming to our house and was even more excited that she stayed and played.  It was really good to sit and talk with her mom too.  She is amazing and its always nice to be able to talk to someone who "gets it" and knows what Im talking about without having to explain what things mean.  You learn so much cancer lingo that sometimes I forget that people have no idea what Im talking about when I talk about his ANC or crit. 

Next we had Skylers physical therapist come and work with him a little.  He is still so stiff in his feet and weak that he compensates in his walking and still walks different.  He has been eating better and I think has gained a couple pounds so that will help with his walking as he gets stronger but I also really need to work hard on stretching his feet and legs.  Its hard to do it for too long though because it still causes him alot of pain.  His endurance is getting better though which is really good.  He can walk farther now without tiring as fast.

We also had some people over to interview me and Skyler who are working on a cancer documentary.  I was expecting the guy to bring a notepad to jot down notes or something but he showed up with actual camera equipment and filmed me. (I guess I probably should have dressed up more)  I get super nervous with this stuff and am not the best at talking on the spot, but they were really nice and the documentary is going to be great so that made it easier.  It was fun being able to talk with them and get their take on the cancer world.  Im grateful that they were so nice in listening about our cancer journey so far.

Even though this break hasnt been what I had imagined due to needing a unit of blood and having to hook him up to his Meropenem throughout the day and night, we still have been able to get out and do some fun things that he has been wanting to do.  Its been so nice having him feel good and to be able to say yes to more things.  He is also so happy all the time now and has been so cute.  Its been wonderful!!


Our first big outing was to the movie theater to see SpyKids.  Skyler loves going to movies and loves SpyKids.  He says when he grows up he wants to be one of the guys that makes video games but on Tuesdays and Thursdays he wants to be a spy.  I took him during the day when all the kids were in school and lucky for us we were the only ones in the theater.  He got a big bucket of popcorn and licorice and really enjoyed the movie.  This movie was in 4D meaning it had smells.  He had a card full of numbers and when a number flashed on the screen he would scratch it and sniff it and it would smell like the thing on the screen.  He thought it was awesome!  My favorite part about the movie was the main boy spy kid had hearing aids and they were blue just like Skyler picked out.  It was just the right timing to see this because Skyler should be getting his within the next couple of weeks.

We also went to the Aquarium.  He loved it because he loves fish.  Here he is with a small shark behind him

This was my favorite part...the penguins!  Skyler thought they were so cute and funny and kept laughing at them

Another favorite part of mine was watching him wave to all the fishies.  So cute!

I was even brave enough to take him out to eat.  Even though I was secretly having a panic attack I took him into eat at The Pizza Factory.  It wasnt really busy which made it a little easier for me.  He loved the giant bread sticks they have there.

We went mini golfing again too.  Grandpa and Ty came too and he had so much fun.  For Skylers sake we reversed it and whoever gets the most points wins.  Guess who won?  Skyler!

Today we went with my dad to the Hill Aerospace Museum to look at all the big jets.  Notice that he isnt wearing a mask inside!  Im getting braver and braver and it feels good to be somewhat normal again. 

I just love this kiddo!!

This was our favorite plane.  It was huge!

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

On August 17th 2010 Skyler was diagnosed with Acute Lymphoblastic Leukemia.  When Skyler is finally done with treatments it will have been over 4 years.  Thats 4 years of his life that he will never get back and 4 years of his life that will take things from him that he will never get back.  He will be living with side effects from this for the rest of his life.

Many of you know that pink is the color for breast cancer.  But did you know that GOLD is the color for childhood cancer?  You see pink ribbons everywhere in the stores and on TV, but where is the GOLD?  Lets give our children a voice, wear gold.  Parents of childhood cancer victims hope that their children live long enough to some day be at risk for breast cancer.  Another cancer mom posted this and its so true.
 Breast cancer awareness supporters- Looking for a great way to gather more people to your cause? Support childhood cancer awareness. Once we find a cure, some of our kids are bound to get breast cancer. And they'll already be great at fighting cancer and bringing awareness. They'll be like the navy seals of cancer fighters. Support childhood cancer awareness to support breast cancer awareness.
By no means am I saying that we should stop supporting other cancers but I am saying that one day I want to see as much gold as I see pink.

Every year childhood cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, AND pediatric AIDS...COMBINED!! On average, 7 children die from cancer each day. That means that this month alone 210 U.S. children will die from cancer.  I have seen this first hand as some of Skylers cancer buddies have already lost their fight.

The incidence of children’s cancer has increased 0.6% each year since 1975. That’s a total of 21% in the last 36 years. Unfortunately, since the 60’s there has only been one new drug approved for use in treating childhood cancer - that was in the 80’s and it’s a drug used only for relapsed leukemia. The one thing that has changed is the dosages of the toxins that kids receive - they keep increasing (which means that the side effects increase as well.

Also Childhood Cancers are the least funded cancers.  It just doesnt seem right that our sweet innocent children that we would do anything for are getting the least amount of funds to find a cure for this devastating disease.  PLEASE help me spread the word so no child has to go through this:

or this...

or this...

or this...

or this...

I know that if we all work together we can give these children a voice and one day find them a cure!
SUPPORT CHILDHOOD CANCER AWARENESS

You can visit these sites for info or to donate towards childhood cancer research:
http://www.curesearch.org/ http://www.alexslemonade.org/ http://www.curechildhoodcancer.ning.com/

Im too tired to say much other than the scan was clear, fevers are getting worse and back on Meropenem.